Category Archives: Smoking Cessation

First double hand transplant involving a child declared a success

After almost 11 hours of surgery involving four teams of doctors, Zion Harvey had earned his place in medical history. The eight-year-old had become the first child in the world to receive two new hands in a procedure that seemed to herald a revolution in transplant medicine.

Two years on, the sports-mad boy from Baltimore, Maryland, is enjoying the freedom and independence his new hands have given him. In the first medical journal report of Zion’s pioneering treatment, published on Wednesday, the experts involved declare the operation a success and say other children could benefit from the knowledge gained.

Zion had to rely on others after he had his hands and feet amputated aged two when he contracted sepsis. For six years he used a combination of his residual limbs and specialist equipment to dress, wash himself and eat – until the double transplant changed his life.

“At 18 months [after the transplant], the child had exceeded his previous adaptive abilities. As of 18 months after transplantation surgery he is able to write and feed, toilet and dress himself more independently and efficiently than he could do before transplantation,” writes the team from the Children’s hospital of Philadelphia in the Lancet Child and Adolescent Health.

Organ transplantation is risky in that a recipient’s body may reject the new body part, while the drug regime involved carries a series of health risks. Two years on from the surgery he had in July 2015, Zion, now 10, is coping well with both.

Zion playing baseball


Zion playing baseball. Photograph: The Lancet/PA

“Cases like this demonstrate how new developments and innovation in science and transplantation have the potential to make enormous differences to the quality of life of patients,” said Lorna Marson, the president of the British Transplantation Society, which represents specialists working in the field across the NHS.

“Transplantation is a constantly evolving sector and it is heartening to hear the positive outcomes of groundbreaking transplants such as this one.”

More than 100 people worldwide have had a hand or arm transplant since the first adult received a new hand in 1998, closely followed by the first replacement of both hands in 2000. Many countries now conduct such transplants on small numbers of carefully selected patients.

In May 2000, a baby girl in Malaysia who was born with a severe congenital deformity became the first child to receive a new hand and arm, transplanted from her identical twin sister who died at birth.

Hand transplant graphic

In an update last year on his progress in the year since his surgery, Zion said: “The only thing that’s different is instead of no hands, I have two hands. I’m still the same kid everybody knew without hands.”

Referring to his new hands, he added: “Here’s the piece of my life that was missing. Now it’s here, my life is complete.”

Within eight months of the operation Zion was using scissors and crayons and after a year he was able to swing a baseball bat with both hands – once throwing the opening pitch at a Baltimore Orioles game.

Dr Scott Levin, team leader for Zion’s 10-hour surgery, has praised his young patient’s bravery. “I’ve never seen Zion cry. I’ve never seen him not want to do his therapy. He’s just such a remarkable human being, let alone child or adult. He has such courage and determination and gives us all inspiration,” he said.

But the last two years have been mentally and physically hard for Zion. He has had huge amounts of physiotherapy and occupational therapy to help him adjust, as well as counselling to aid his psychological recovery.

Zion after the transplant surgery in 2015


Zion after the transplant surgery in 2015. Photograph: Clem Murray/Rex Shutterstock

The doctors write: “Since his surgery he has undergone eight rejections of the hands, including serious episodes during the fourth and seventh months of his transplant. All of these were reversed with immunosuppression drugs without impacting the function of the child’s hands.”

He is still taking four different immunosuppressant drugs to maximise the chances of his body continuing to tolerate the pair of new hands, though doctors hope to reduce the dose.

“While functional outcomes are positive and the boy is benefitting from his transplant, this surgery has been very demanding for this child and his family,” said Dr Sandra Amaral, a member of the team at the Philadelphia hospital.

However, in an accompanying comment article, Dr Marco Lanzetta, an Italian expert in hand transplant surgery, doubts that many children could tolerate a similar procedure and highlights the risks from lifelong use of immunosuppressants. Zion’s case was exceptional as he was already on the drugs, after receiving a kidney from his mother, Pattie Ray.

Prosthetic hands and limbs, adds Lanzetta, have now developed so much that they, rather than transplant surgery, are more likely to prove the future for patients like Zion.

Senior doctors call for public inquiry into use of vaginal mesh surgery in UK

Senior doctors have called for a public inquiry into the use of vaginal mesh surgery amid mounting concerns that a significant proportion of patients have been left with traumatic complications.

Speaking at a meeting in parliament, Carl Heneghan, professor of evidence-based medicine at the University of Oxford, drew comparisons with the thalidomide scandal, saying that there was evidence that mesh procedures, used to treat complications from childbirth, carry significantly more risk than official figures suggest.

“With thalidomide you could see the visual representation. [With mesh] you can’t see it,” Heneghan told the meeting. “We should have a public inquiry.”

Between 2007 and 2016, more than 126,000 women in England were treated with mesh implants, tapes and slings, for urinary incontinence and organ prolapse, according to figures obtained by the Guardian.

The procedures involve inserting a plastic mesh into the vagina to support the bladder, womb or bowel. In the majority of cases these operations are quick and successful.

However, speaking at the meeting in parliament, Heneghan and Sohier Elneil, a consultant urogynaecologist at University College Hospital, said that complication rates for some types of procedure appeared to be unacceptably high, and raised questions about whether the surgery was being used inappropriately.

Elneil said that unpublished research by her team, based on Hospital Episode Statistics, suggest that urinary incontinence surgery has a readmission rate of 8.9% and that most of these patients required some form of subsequent procedure. “These are not minor complications,” she said.

By contrast, a report by the Medicines and Healthcare Products Regulatory Agency (MHRA), the government watchdog, suggested a roughly 1-2% rate of pain or “erosion” for mesh procedures related to incontinence.

Heneghan cited a Lancet study, which showed that the readmission rate for one form of mesh surgery for prolapse was 19% – although the figure varied depending on the type of procedure.

The meeting came as a group of patients in the UK are preparing a class action against manufacturers. David Golten, a partner at Wedlake Bell LLP, claims his firm is already representing 200 women. Previously, there have been huge payouts linked to lawsuits in the US and a major trial against Johnson & Johnson began in Australia last week.

Lawyer Rebecca Jancauskas, left, with Gai Thompson, Joanne Maninon and Carina Anderson, members of the class action against Johnson & Johnson which began in Sydney last week.


Lawyer Rebecca Jancauskas, left, with Gai Thompson, Joanne Maninon and Carina Anderson, members of the class action against Johnson & Johnson which began in Sydney last week. Photograph: Paul Miller/AAP

The meeting also heard a series of harrowing testimonies from patients who had experienced life-altering complications due to surgery.

Karen Preater, 40, from Rhyl, described how she was left with intense pain after having mesh surgery to treat incontinence. “My kids don’t remember the mum from three and a half years ago. I don’t do the things I used to do,” she said. “I can categorically say, if I didn’t have my children I wouldn’t be here today.”

Carol Williams, 58, also from North Wales, broke down in tears as she told the meeting how she had been admitted to the Priory clinic after becoming suicidal due to an escalating series of complications brought about by her surgery for pelvic prolapse.

Others spoke of “cheese wire” pain, removal of organs that had become ensnared in the mesh, loss of their sex lives and the psychological toll of not being listened to by their doctors. One women said she was being treated for post-traumatic stress disorder “like a soldier coming back from Afghanistan”.

In some cases, the patients had opted for what they said was presented as a “quick fix” to treat problems that were annoying but not debilitating, such as mild urinary incontinence.

John Osborne, a retired gynaecologist, said that when the procedure was introduced in the 1990s, it was used far too liberally, in the absence of good evidence on the risks.

“Surgeons were saying ‘no problem, I can fix you up with a little mesh’,” he said. “The mesh was being put in too many people, too easily. I’m not saying that mesh should be totally banned, but not used in the numbers that it has been.”

If problems occur, having the procedure reversed is a complex and risky procedure because the mesh, which is designed to be permanent, becomes embedded in the surrounding tissue. Kath Sansom, founder of Sling the Mesh campaign, described this as like “trying to remove chewing gum from matted hair”.

The meeting in parliament was organised by Owen Smith, the Labour MP for Pontypridd, and Sling the Mesh, a campaign group that is calling for the procedure to be banned.

However, other doctors have cautioned that problems have arisen mostly due to aggressive marketing of substandard products by companies and, in some cases, inadequate training on the part of doctors.

Mark Slack, a consultant gynaecologist at Addenbrookes Hospital in Cambridge, said: “The TVT [the most common mesh procedure] is a good operation if done by the right people by the right indications,” he said.

“We now for the first time have masses of patients coming in and saying ‘You’re not going to put mesh in me are you?’” he added. “There’s a danger of creating a massive problem.”

Alternative treatments for incontinence and prolapse also carry risks, he said – and in some cases the complication rates could be worse.

In a statement, the MHRA said: “Patient safety is our highest priority and we sympathise with women who have suffered complications after surgery.

“We are committed to help address the serious concerns raised by some patients. We have undertaken a great deal of work to continuously assess findings of studies undertaken by the clinical community over many years, as well as considering the feedback from all sources in that time.

“What we continue to see is that evidence supports the use of these devices in the UK for treatment of the distressing conditions of incontinence and organ prolapse, in appropriate circumstances. This is supported by the greater proportion of the clinical community and patients.

“In common with other medical device regulators worldwide, none of whom have removed these devices from the market, we are not aware of a robust body of evidence which would lead to the conclusion these devices are unsafe if used as intended.”

Big tobacco bullies the global south. Trade deals are their biggest weapon | Matthew Bramall and Paul Keenlyside

Cigarette packets often carry the warning to “protect children: don’t make them breathe your smoke”. In 2014, the Kenyan government attempted to do just that – banning the sale of single cigarettes, banning smoking in vehicles with a child and keeping the tobacco industry out of initiatives aimed at children and young people.

But as the Guardian reported last week, British American Tobacco, in an effort to keep Kenyans breathing their smoke, fought the regulations on the grounds that they “constitute an unjustifiable barrier to international trade”.

In fact, big tobacco has a long history of using trade and investment rules to force their products on markets in the global south and attack laws and threaten lawmakers that attempt to control tobacco use.

Back in the 1980s, as cigarette consumption fell off in North America and western Europe, US trade officials worked aggressively to grant American companies access to markets in Asia, demanding not only the right to sell their products, but also the right to advertise, sponsor sports events and run free promotions. Smoking rates surged.

In the 1990s, World Trade Organisation agreements led to a liberalisation of the international tobacco trade, with countries reducing import tariffs on tobacco products. The impact, according to a joint study of the World Health Organisation and the World Bank, was a 5% increase in global cigarette consumption and accompanying mortality rates.

Big tobacco’s lawyers were quick to discover the value of “next generation” trade agreements. In the 1990s, Canada dropped a plain packaging initiative after US manufacturers threatened a suit using the first next-gen trade deal, the North American Free Trade Agreement (Nafta). A few years later, Philip Morris threatened Canada again after it prohibited terms such as “light” and “mild” cigarettes. Philip Morris argued it would be owed millions in compensation for damage to its brand identity.

Philip Morris was able to credibly wield this threat because of the extraordinary powers that Nafta grants international corporations: the right to sue governments in private tribunals over regulations that affect their profits.

A toxic combination of far-reaching and poorly defined “rights” for investors, eye-watering legal costs, and tribunals composed of corporate lawyers with the power to set limitless awards against governments makes investment arbitration and the modern “trade” agreement a formidable weapon to intimidate regulators.

And what big tobacco learned in the global north it has been replicating in the global south, where threats carry greater force against poorer countries that may lack the resources to see down a legal challenge.

In 2010, Philip Morris launched a $ 25m claim against Uruguay after it introduced graphic warnings on cigarette packs. Though Uruguay successfully defended the measure, it still faced millions in legal costs. And Philip Morris effectively won, as Costa Rica and Paraguay held off introducing similar measures.

Such are the fears around big tobacco’s aggressive use of trade and investment rules that the US-negotiated Trans-Pacific Partnership trade deal featured a carve-out excluding big tobacco from investment protections – an explicit admission of the problem.

But this does not go far enough. The important thing to realise is that the problem goes beyond big tobacco. Big oil, big pharma and big mining follow the same playbook, launching investment arbitration cases to defend their business models from governments that would regulate to protect public health, the local environment or the climate.

Rather than target individual companies or sectors, we must push our governments to reform trade and investment rules that grant such extraordinary powers to corporations. That means removing special investor rights and investment courts from trade agreements. It means removing limits on the freedom of governments to protect public health, labour and human rights and the environment.

Of course, this is easier said than done. Robert Lighthizer, US trade representative, served as deputy in a Reagan administration that pressured countries to open their tobacco markets to US exporters in the 1980s.

Vice-President Mike Pence’s record includes opposing smoking regulation, taking huge campaign donations from big tobacco, and denying the causal link between smoking and lung cancer. The EU commission, meanwhile, has been criticized for its meetings with big tobacco while it was negotiating EU-US trade talks.

The good news is that from Brazil to India to Ecuador, countries are stepping away from outdated trade and investment rules. In the UK, the Labour party manifesto opposes parallel courts for multinationals and proposes to review the UK’s investment treaties.

But until we scrap the powers that we grant big tobacco and others to frustrate and bypass our laws, efforts around the world to protect public health will continue to go up in smoke.

Hearing loss could pose greater risk of potential dementia in later life – study

People who experience hearing loss could be at greater risk of memory and thinking problems later in life than those without auditory issues, research suggests.

The study focused on people who were at risk of Alzheimer’s disease, revealing that those who were diagnosed with hearing loss had a higher risk of “mild cognitive impairment” four years later.

“It’s really not mild,” said Clive Ballard, professor of age-related disease at the University of Exeter. “They are in the lowest 5% of cognitive performance and about 50% of those individuals will go on to develop dementia.”

Presented at the Alzheimer’s Association International Conference in London, researchers from the US looked at the memory and thinking skills of 783 cognitively healthy participants in late middle age, more than two-thirds of whom had at least one parent who had been diagnosed with Alzheimer’s disease.

The team carried out a range of cognitive tests on the participants over a four-year period, aimed at probing memory and mental processing, revealing that those who had hearing loss at the start of the study were more than twice as likely to be found to have mild cognitive impairment four years later than those with no auditory problems, once a variety of other risk factors were taken into account.

Taylor Fields, a PhD student at the University of Wisconsin who led the research, said that the findings suggest hearing loss could be an early warning sign that an individual might be at greater risk of future cognitive impairment – but added more research was necessary to unpick the link.

“There is something here and it should be looked into,” she said.

It is not the first study to suggest a link between hearing loss and cognitive troubles – previous research has found that the more severe hearing loss is, the greater the risk of dementia.

But it is not yet clear whether hearing loss is the result of changes linked to dementia, or whether hearing loss itself could contribute to cognitive decline. As a result, it is unclear whether treating hearing loss could mitigate against increased risk.

“Potentially it is something you can do something about, which I think makes it really important to understand better,” said Ballard.

In a separate study, researchers from Wisconsin found a link between thinking and memory difficulties, and changes to the fluency of speech. In 219 late-middle aged participants were assessed at the beginning and end of a two year period. The team found that those with early signs of mild cognitive impairment at the start of the study showed a steeper decline in fluency over the two years than those without.

A further series of studies presented at the conference focused on the link between diet and prowess at memory and thinking tasks. While all differed in the range of participants and the type of diet applied, overall the results suggest that eating healthily was linked to a lower risk of cognitive difficulties, and even a lower risk of dementia.

In one study, carried out by researchers in the US with almost 6,000 participants, scientists found that after taking into account a host of factors including smoking, physical activity, health and socioeconomic status, those who stuck best to a Mediterranean or similar diet over the course of a year were about 35% less likely to have low scores on cognitive tests than those who did not stick to the regime.

While the study does not show that eating badly triggers cognitive problems, and further work is needed to monitor the impact of the diet over time, Claire McEvoy – co-author of the research from the University of California San Francisco – noted that benefits of healthy eating seem to exist on a sliding scale.

“Even moderate adherence to these high quality dietary patterns showed a protective association with cognitive function,” she said.

Stressful experiences can age brain ‘by years’, Alzheimer’s experts hear

Stressful life experiences can age the brain by several years, new research suggests. Experts led by a team from Wisconsin University’s school of medicine and public health in the US found that even one major stressful event early in life may have an impact on later brain health.

The team examined data for 1,320 people who reported stressful experiences over their lifetime and underwent tests in areas such as thinking and memory. The subjects’ average age was 58 and included 1,232 white Americans and 82 African Americans. A series of neuropsychological tests examined several areas, including four memory scores (immediate memory, verbal learning and memory, visual learning and memory, and story recall).

Stressful life experiences included things such as losing a job, the death of a child, divorce or growing up with a parent who abused alcohol or drugs. The results showed that a larger number of stressful events was linked to poorer cognitive function in later life.

When looking specifically at African Americans, the team found they experienced 60% more stressful events than white people during their lifetimes. Researchers said that, in African Americans, each stressful experience was equivalent to approximately four years of cognitive ageing.

The study, which has not been published in a peer-reviewed journal, was presented at the Alzheimer’s Association international conference in London.

Dr Maria Carrillo, the chief science officer for the Alzheimer’s Association, said: “The stressful events that the researchers were focusing on were a large variety … the death of a parent, abuse, loss of a job, loss of a home … poverty, living in a disadvantaged neighbourhood, divorce.” She said that even a change of school could be regarded as a stressful life event for some children.

Dr Doug Brown, the director of research at the Alzheimer’s Society, said: “We know that prolonged stress can have an impact on our health, so it’s no surprise that this study indicates stressful life events may also affect our memory and thinking abilities later in life. However, it remains to be established whether these stressful life events can lead to an increased risk of dementia.

“Studying the role of stress is complex. It is hard to separate from other conditions such as anxiety and depression, which are also thought to contribute towards dementia risk.

“However, the findings do indicate that more should be done to support people from disadvantaged communities that are more likely to experience stressful life events. As we improve our understanding of risk factors for dementia, it is increasingly important to establish the role that stress and stressful life events play.”

Other research has suggested there are plausible links between stress and chronic inflammation, which in turn may accelerate the development of dementia. But experts believe that a health lifestyle and a healthy diet can help mitigate this risk, even for those people going through stressful events.

Sick patients dying ‘unnecessarily’ in NHS because of poor care

Some of the sickest patients that hospitals treat are dying unnecessarily because they receive poor care, blighted by shortages of staff and equipment, a new NHS inquiry has revealed.

A death rate of one in three among inpatients who need emergency help with breathing is already high by international standards, and is getting worse.

The analysis by the National Confidential Enquiry into Patient Outcome and Death of NHS services for the 50,000 patients a year who receive emergency oxygen treatment uncovered a series of major flaws in the care they received. It described its findings as “shocking”.

The growing numbers of patients who receive non-invasive intervention (NIV) – oxygen through a face mask – usually have chronic obstructive pulmonary disease, pneumonia or other conditions which mean they cannot breathe unaided. Despite their lives being at risk, the vast majority receive sub-standard care, according to an in-depth examination of 353 patients during February and March.

“The care of these patients was rated as less than good in four out of five cases. The mortality rate was high: more than one in three patients died,” the inquiry found. “Supervision of care and patient monitoring were commonly inadequate. Case selection for NIV was often inappropriate and treatment was frequently delayed due to a combination of service organisation and a failure to recognise that NIV was needed.” In addition, investigators found from examining case notes that “the quality of medical care provided was often poor. This poor care included both non-ventilator treatment and ventilation management, which were frequently inappropriate”.

Dr Mark Juniper, a co-author of the report and NCEPOD’s lead clinical coordinator for medicine, said the sheer extent of problems he and his colleagues uncovered meant their hard-hitting conclusions were justified.

“This is a major problem which is resulting in unnecessary loss of life. Four out of five patients didn’t receive care that we as doctors would be happy to receive. That’s quite an indictment. That’s shocking because all these patients are at risk of dying.”

NIV in emergency situations is meant to reduce the risk of dying from 20% to 10%. However, NCEPOD found that the death rate among UK patients is 34% – “really troubling”, said Juniper. By contrast, it is only 18% in Spain while France has cut its death rate in recent years from more than 20% to 10%. The UK death rate has been rising steadily since the 30% recorded in 2011.

Two out of five hospitals at some point had been unable to cope with the number of patients who needed NIV because they lacked equipment. “Lack of ventilators is a common problem, even though a basic machine costs about £1,000 to £2,000. When there are too many patients, some end up receiving other medical treatment that’s not as good as ventilation. That will give them a higher risk of dying.”

Other failings researchers found included a lack of nurses, meaning that less than half of hospitals are able to provide the staffing ratio – one nurse to two NIV patients – which guidelines since 2010 have said should be in place. One in five patients who received NIV either did not need it, or needed to be on life support in an intensive care unit instead. In 47% of cases doctors did not convert the patient’s vital signs, such as their temperature, blood pressure and oxygen levels, into an “early warning score” to help dictate the treatment they received. Doctors were often “really poor” at documenting the condition of patients on NIV, probably because of understaffing.

“With these very sick patients the NHS needs to improve a lot – and fast, because lives are at stake,” said Juniper.

Dr Mike Davies, a consultant in respiratory medicine and spokesman for the British Thoracic Society, which represents lung specialists, said the findings had to “act as a stimulus to improve care for NIV patients. We need a concerted effort across the NHS to help reduce avoidable deaths.”

Professor Lesley Regan, who chairs NCEPOD, said the NHS had to learn lessons from the inquiry, given how many patients receive inadequate care. “Many hospitals fail to grasp the size of the problem, as acute NIV usage is all too easily hidden due to poor coding.”

NCEPOD has also found inaccurate coding causes problems among patients who have had a tracheostomy or have sepsis or acute pancreatitis.

She wants hospitals to appoint “local champions” to assess the state of NIV services and ensure that they have the staff and equipment needed.

Sick patients dying ‘unnecessarily’ in NHS because of poor care

Some of the sickest patients that hospitals treat are dying unnecessarily because they receive poor care, blighted by shortages of staff and equipment, a new NHS inquiry has revealed.

A death rate of one in three among inpatients who need emergency help with breathing is already high by international standards, and is getting worse.

The analysis by the National Confidential Enquiry into Patient Outcome and Death of NHS services for the 50,000 patients a year who receive emergency oxygen treatment uncovered a series of major flaws in the care they received. It described its findings as “shocking”.

The growing numbers of patients who receive non-invasive intervention (NIV) – oxygen through a face mask – usually have chronic obstructive pulmonary disease, pneumonia or other conditions which mean they cannot breathe unaided. Despite their lives being at risk, the vast majority receive sub-standard care, according to an in-depth examination of 353 patients during February and March.

“The care of these patients was rated as less than good in four out of five cases. The mortality rate was high: more than one in three patients died,” the inquiry found. “Supervision of care and patient monitoring were commonly inadequate. Case selection for NIV was often inappropriate and treatment was frequently delayed due to a combination of service organisation and a failure to recognise that NIV was needed.” In addition, investigators found from examining case notes that “the quality of medical care provided was often poor. This poor care included both non-ventilator treatment and ventilation management, which were frequently inappropriate”.

Dr Mark Juniper, a co-author of the report and NCEPOD’s lead clinical coordinator for medicine, said the sheer extent of problems he and his colleagues uncovered meant their hard-hitting conclusions were justified.

“This is a major problem which is resulting in unnecessary loss of life. Four out of five patients didn’t receive care that we as doctors would be happy to receive. That’s quite an indictment. That’s shocking because all these patients are at risk of dying.”

NIV in emergency situations is meant to reduce the risk of dying from 20% to 10%. However, NCEPOD found that the death rate among UK patients is 34% – “really troubling”, said Juniper. By contrast, it is only 18% in Spain while France has cut its death rate in recent years from more than 20% to 10%. The UK death rate has been rising steadily since the 30% recorded in 2011.

Two out of five hospitals at some point had been unable to cope with the number of patients who needed NIV because they lacked equipment. “Lack of ventilators is a common problem, even though a basic machine costs about £1,000 to £2,000. When there are too many patients, some end up receiving other medical treatment that’s not as good as ventilation. That will give them a higher risk of dying.”

Other failings researchers found included a lack of nurses, meaning that less than half of hospitals are able to provide the staffing ratio – one nurse to two NIV patients – which guidelines since 2010 have said should be in place. One in five patients who received NIV either did not need it, or needed to be on life support in an intensive care unit instead. In 47% of cases doctors did not convert the patient’s vital signs, such as their temperature, blood pressure and oxygen levels, into an “early warning score” to help dictate the treatment they received. Doctors were often “really poor” at documenting the condition of patients on NIV, probably because of understaffing.

“With these very sick patients the NHS needs to improve a lot – and fast, because lives are at stake,” said Juniper.

Dr Mike Davies, a consultant in respiratory medicine and spokesman for the British Thoracic Society, which represents lung specialists, said the findings had to “act as a stimulus to improve care for NIV patients. We need a concerted effort across the NHS to help reduce avoidable deaths.”

Professor Lesley Regan, who chairs NCEPOD, said the NHS had to learn lessons from the inquiry, given how many patients receive inadequate care. “Many hospitals fail to grasp the size of the problem, as acute NIV usage is all too easily hidden due to poor coding.”

NCEPOD has also found inaccurate coding causes problems among patients who have had a tracheostomy or have sepsis or acute pancreatitis.

She wants hospitals to appoint “local champions” to assess the state of NIV services and ensure that they have the staff and equipment needed.

Sick patients dying ‘unnecessarily’ in NHS because of poor care

Some of the sickest patients that hospitals treat are dying unnecessarily because they receive poor care, blighted by shortages of staff and equipment, a new NHS inquiry has revealed.

A death rate of one in three among inpatients who need emergency help with breathing is already high by international standards, and is getting worse.

The analysis by the National Confidential Enquiry into Patient Outcome and Death of NHS services for the 50,000 patients a year who receive emergency oxygen treatment uncovered a series of major flaws in the care they received. It described its findings as “shocking”.

The growing numbers of patients who receive non-invasive intervention (NIV) – oxygen through a face mask – usually have chronic obstructive pulmonary disease, pneumonia or other conditions which mean they cannot breathe unaided. Despite their lives being at risk, the vast majority receive sub-standard care, according to an in-depth examination of 353 patients during February and March.

“The care of these patients was rated as less than good in four out of five cases. The mortality rate was high: more than one in three patients died,” the inquiry found. “Supervision of care and patient monitoring were commonly inadequate. Case selection for NIV was often inappropriate and treatment was frequently delayed due to a combination of service organisation and a failure to recognise that NIV was needed.” In addition, investigators found from examining case notes that “the quality of medical care provided was often poor. This poor care included both non-ventilator treatment and ventilation management, which were frequently inappropriate”.

Dr Mark Juniper, a co-author of the report and NCEPOD’s lead clinical coordinator for medicine, said the sheer extent of problems he and his colleagues uncovered meant their hard-hitting conclusions were justified.

“This is a major problem which is resulting in unnecessary loss of life. Four out of five patients didn’t receive care that we as doctors would be happy to receive. That’s quite an indictment. That’s shocking because all these patients are at risk of dying.”

NIV in emergency situations is meant to reduce the risk of dying from 20% to 10%. However, NCEPOD found that the death rate among UK patients is 34% – “really troubling”, said Juniper. By contrast, it is only 18% in Spain while France has cut its death rate in recent years from more than 20% to 10%. The UK death rate has been rising steadily since the 30% recorded in 2011.

Two out of five hospitals at some point had been unable to cope with the number of patients who needed NIV because they lacked equipment. “Lack of ventilators is a common problem, even though a basic machine costs about £1,000 to £2,000. When there are too many patients, some end up receiving other medical treatment that’s not as good as ventilation. That will give them a higher risk of dying.”

Other failings researchers found included a lack of nurses, meaning that less than half of hospitals are able to provide the staffing ratio – one nurse to two NIV patients – which guidelines since 2010 have said should be in place. One in five patients who received NIV either did not need it, or needed to be on life support in an intensive care unit instead. In 47% of cases doctors did not convert the patient’s vital signs, such as their temperature, blood pressure and oxygen levels, into an “early warning score” to help dictate the treatment they received. Doctors were often “really poor” at documenting the condition of patients on NIV, probably because of understaffing.

“With these very sick patients the NHS needs to improve a lot – and fast, because lives are at stake,” said Juniper.

Dr Mike Davies, a consultant in respiratory medicine and spokesman for the British Thoracic Society, which represents lung specialists, said the findings had to “act as a stimulus to improve care for NIV patients. We need a concerted effort across the NHS to help reduce avoidable deaths.”

Professor Lesley Regan, who chairs NCEPOD, said the NHS had to learn lessons from the inquiry, given how many patients receive inadequate care. “Many hospitals fail to grasp the size of the problem, as acute NIV usage is all too easily hidden due to poor coding.”

NCEPOD has also found inaccurate coding causes problems among patients who have had a tracheostomy or have sepsis or acute pancreatitis.

She wants hospitals to appoint “local champions” to assess the state of NIV services and ensure that they have the staff and equipment needed.

The man who may have secretly fathered 200 children

Twenty five years ago, when she was 35, Esther-Louise Heij made two decisions that would shape the rest of her life. The first decision went entirely to plan: it gave her the children she longed for. But the second decision would play out in a bizarre twist she could never have imagined, and would plunge her family into a sea of heartache that continues to this day.

Both decisions were brave to make a quarter of a century ago, and are testament to Heij’s judgment as well as her tenacity. First, she decided that although she was single, and had recently ended a 12-year relationship, she would forge ahead with her plans to become a mother by opting for IVF with donor sperm.

Second, and no less unusual at the time, she would make sure that her children would be able to trace their genetic father.

“Back then, the accepted wisdom was that donor children didn’t need to know,” she says. “But I felt it was their right to know. Where we come from, who our parents are – these things are important in anyone’s life, and I wanted them for my children.”

She heard about a clinic near Rotterdam whose director sounded forward-thinking, went along for a consultation, and was impressed.

“The doctor seemed very good at what he did,” she says. “He was a pioneer in his attitudes. He talked me through what it would be like to raise children on my own; he seemed very serious and professional.”

And he was supportive, too, of her hope that any children she had would be able to know their father. “He assured me that would be possible. He was an important doctor in a white coat. I trusted him; it never crossed my mind that I couldn’t.”

The doctor, Jan Karbaat, told Heij that he would find a donor whose physical attributes fitted into her family. “He asked me for pictures of my relatives, so he could find a good match. And he said he would make sure the donor was a man who would be open to being traced later.”

The Heij family.


The Heij family. Photograph: Joanna Moorhead

Heij and her children live in the southernmost tip of the Netherlands: their village, she tells me proudly, is on the only mountain in the country. “You won’t see scenery anywhere else in Holland like this,” she says, as we drive up the hill towards their house. Its hilltop position is fitting, because there have been many peaks and troughs to navigate for the Heij family.

During a long relationship with a partner, the one that lasted 12 years, she was pregnant twice; both times it ended in a stillbirth. Once she got the go-ahead for IVF from Karbaat, there would be nine unsuccessful attempts before she got a positive result. A daughter, Lotte, now 23, was born in 1994. Almost two years later, in 1995, Heij gave birth to a second child, Yonathan; Karbaat assured her the sperm was from the same donor.

Being a single mother of two was tough; but it was also the life she had wanted, and Heij has no complaints. The family moved around, supported by her work as a physiotherapist: living first in a village on an island in the north of Holland, then on an island in Norway.

She tried to be as open as possible with the children about their roots. “I told them: ‘A man gave his seed and that’s how you were born: if you want to know who he is you will get the chance to do that one day.’”

There were many children in the neighbourhood who didn’t live with both parents; but people asked questions that weren’t always easy to deal with, particularly for Yonathan. “They would say, ‘Where is your father?’ I made up a story about him being a man called Peter from Rotterdam, who was the captain of a ship, which explained why he was never around.”

One of the things that brought them back to Holland was Yonathan’s academic prowess: he was bright, and teachers at the small school in Norway felt they couldn’t challenge him sufficiently. Back in Holland, though, he flourished; Lotte, too.

When Lotte reached 16, she turned out not to have a burning desire to contact their father. Two years later, Yonathan took a different view. “For a boy to grow up without a father figure is a big thing; a father is important, especially for a boy. I wanted to know who he was: there were things I wanted to ask him. And I wanted to find out whether certain ways I behaved were connected with him – things that made me seem different from my mother and my sister, like that I’m much more laid back than they are.”

In 2011, Yonathan and his mother approached the organisations that should have been able to get the information she needed from Karbaat’s clinic. The news that came back was worrying: the files were in disarray, records had not been properly kept, and it was going to be difficult to find out who their donor was. What had originally seemed like an easy quest was going to be a much tougher haul; but they pressed on, making phone calls and filling in forms and requesting information.

Yonathan and Lotte speak to journalists prior to a court decision last month.


Yonathan and Lotte speak to journalists prior to a court decision last month. Photograph: Remko de Waal/EPA

At the same time, though, they became aware of growing suspicions about Karbaat’s clinic. “Rumours were rife,” says Yonathan. There were stories starting to circulate that the sperm donors had been fellow doctors, medical students; but the biggest upset of all were rumours that Jan Karbaat himself had provided much of the sperm that had impregnated his patients.

“We were in shock – it was a feeling of total disbelief. Karbaat was a doctor, and to use his own sperm to get women pregnant would have been totally prohibited. It was difficult to process the enormity of what this meant. But right away I thought: ‘This man could be my father.’ I was scouring pictures of him, looking for physical similarities.”

Yonathan was thrown into emotional turmoil. He had previously written to Karbaat asking for information about his father, and the letters had been returned unopened. “I thought, is that how little he cares? He seemed so cold, so arrogant. And this man could be my father – it was all very hard to come to terms with.”

Then a documentary about the clinic, shown on Dutch TV, raised the disturbing possibility that as many as 200 children could have been fathered by the same sperm donor.

“Yonathan was watching the television, saying: ‘These could be our brothers and sisters,’” says Heij. “A lot of them were very intelligent, just like him; and we were looking at them thinking: ‘Do they look like Yonathan and Lotte?’”

The family was thrown into a quandary, and found themselves at the centre of a very public controversy: eventually, both children gave DNA samples to find out whether they were related to any of the others conceived at the clinic who were now seeking answers.

Groups of individuals were found who were related to each other, but there seemed to be no sibling match for Yonathan and Lotte. “It was disappointing,” says Yonathan. “I hoped I would find at least some siblings. But I still wanted to know who my father was. Some people were saying: ‘If your father was Karbaat, maybe it would be better not to know.’ After all, he’s turned out to be an unscrupulous man. But I said no, I still want to know – however bad he was, he must have had some good qualities. It was like part of my identity was missing. I knew I needed to find out the truth.”

Over the past 18 months, a group of families whose children were born via IVF at Karbaat’s clinic have started legal proceedings to allow them to do DNA tests using cells from Karbaat.

Karbaat opposed the move, but he died, aged 89, in April this year. Police seized personal objects from his home, including his toothbrush, and a ruling on whether the DNA taken can be released to the families is expected shortly. In the meantime, though, the Heij family’s own DNA tests have proved Yonathan and Lotte are definitely full siblings, and that their father is most likely to come from central Europe.

The Heij family.


The Heij family. Photograph: Courtesy Esther-Louise Heij

The situation is changing all the time, says Yonathan: one of Karbaat’s acknowledged children has now been DNA-tested, and the results of that test suggest it’s less likely the Heij children are Karbaat’s, though by no means certain.

“Everything is up in the air now. I’m conscious that I may get a phone call tomorrow telling me who my father was, or I might have to wait 20 years,” he says. “It feels like waiting to find out whether you’ve won the lottery, but knowing you probably will.”

Indeed, according to Laura Bosch, of Defence for Children in Leiden – the legal organisation representing the Heijes and other families – that is precisely the point: technological advances, she says, have made ethical issues concerning paternity identification redundant.

“The existence of large DNA databases mean it’s getting easier and easier to trace a donor parent – it’s no longer feasible for anyone to say donors have the right to anonymity. I would argue that in any case the child’s right to information should prevail, and takes precedence over the donor’s right to anonymity, but the landscape is shifting.”

The health minister of the Netherlands, Edith Schippers, has asked men who donated sperm pre-2005, when the right to anonymity was lifted, to do “a second good deed” and come forward to make it easier for their children to trace them.

The emotional turmoil has taken its toll on 58-year-old Heij, who seems tired, and is tearful discussing all she’s been up against. But when it comes to Karbaat, she finds it impossible to condemn him out of hand. “He made me a mother,” she says simply. “He gave me these wonderful children. But he was also arrogant and narcissistic. He seems to have thought he was better than other donors, that he was doing women a favour to get them pregnant using his sperm.”

For Yonathan, meanwhile, the saga has led to what might seem a surprising decision. “I’ve decided to become a sperm donor myself,” he says.

As he explains it, it makes perfect sense. “I know that any children born as a result will be able to find me in the future. And I feel I will be able to help them, I will understand their situation in a way some donors can’t, because I’ve been through everything they’re going through. I will be able to relate.”

On Karbaat, his feelings are mixed. “He was a clever man but it’s dangerous to allow someone to work with no brakes; he had a lot of power, and a big ego. He wasn’t honest with my mother or with other patients – he didn’t tell the whole truth. I feel he had good intentions but his methods were wrong – he didn’t do things the way they should have been done, and some of the things he should never have done at all.”

I took drugs because it was a fast track way of meeting people | Anonymous

When I was 21 I went on holiday to Australia and met someone. We went back to his and for the first time I tried G and T (GHB and crystal meth). I thought, “why not, I’m on holiday”. It was fun, I went lightheaded and it lasted a few hours. After that, when I got home, I didn’t seek out more.

When I moved to London around six months later I met others who were doing it. But drugs for me back then were a social thing you would do in clubs. After three or four years, my social circle changed as friends moved away. I was going out less, but meeting people more. There was no regular pattern to my drug taking, it was just occasional fun.

Q&A

What is chemsex?

Chemsex is defined as the use of drugs before or during planned sexual activity to sustain, enhance, disinhibit or facilitate the experience. It is different to drug use which later leads to sexual activity because the drugs are taken – usually by gay or bisexual men – for the sole purpose of having sex.

The relatively recent phenomenon of chemsex parties, usually among gay or bisexual men, can involve sexual activity with multiple partners. They commonly involves the use of crystal methamphetamine, GHB/GBL and mephedrone, and can sometimes last for several days with little need for sleep or food. It carries serious physical and mental health risks, most significantly around the spread of blood-borne infections and viruses.

Then, aged 27 I was diagnosed with HIV. I didn’t have sex or take drugs for three years after my diagnosis. When I was ready to meet people again I felt like my options were limited because of my HIV status. And the way people were meeting had changed: apps made it easy to meet people and more people were taking drugs.

I’ve always tried to play it as safe as possible, but last summer it went apocalyptic. I went to a party, which I don’t like doing, and I felt really anxious. I took drugs there and ended up having an anxiety attack. From there I was taking drugs every weekend. There was a fear of missing out.

I went into recovery, and accessed counselling from Terrence Higgins Trust, but I relapsed and went back to it, meeting people in groups and lasting for days. I had more STIs more frequently and I know I could do a better job at work if I was more alert and more healthy.

I’ve had depression since I was 16. Drugs help me relax, but they can also be harmful because they give you an artificial sense of confidence. Today I want to stay away from this behaviour, and I think peer support is a good way to do it – speaking to people who are empathetic and have experience of what you are going through.

I don’t want to shut myself off and build a wall because when I feel better I might go back. The new online counselling project from Terrence Higgins Trust will give people support that is empathetic and not constrained by timings and locations.

My advice for anyone who finds themselves seeking support is to identify why they are doing it. For me it was because I felt like I’m damaged goods and as I don’t go out much any more it was a fast track way of meeting people. It’s all very well people telling you to stop – but first you need to know why you’re doing it in the first place.

The author spoke anonymously via Terence Higgins Trust. Terence Higgins Trust and London Friend have launched the first online counselling services for gay and bisexual men who want to make changes around drug and alcohol use and relationships. Working in a similar way to Skype, people can see their counsellor on the screen, or up to 10 people in a support group. The services are available from Friday to Monday. https://www.fridaymonday.org.uk/